Home again Home again

Brooks eating his first solids!

Sorry for the late notice but...we're out of the hospital and home again!  After a surprise 2 1/2 weeks at Children's, McKinley was released on March 9th.  We brought her home with a GJ tube, unable to feed her by mouth and still with symptoms of RSV, but at least we had her home!  The first few days were rough with occasional throwing up still, and still having a difficult time breathing, but little by little she started to feel better.  And for now, we have our happy, vibrant McKinley back!  In a nut shell it was determined that her Gtube was likely placed in the wrong spot, and will need to be replaced.  So in the mean time she still has to be fed by her GJ tube on a slow drip, 20 hours a day. One of the many frustrating things about this experience is that McKinley has decided that she will no longer eat by mouth, not at all.  I'm sure this is a result of not being fed by mouth for over a month. We will be meeting with physical therapists next week that will hopefully help her learn to eat again.  In the mean time, she watches her brother begin to eat solids! That has been quite fun.  Brooks wasn't sure about it at first, but has now decided that he can't get enough. In fact, I've had to google what to do if your child won't stop eating! So far he's had rice cereal, oatmeal, chicken, turkey, squash, sweet potatoes, pears and apples.  I think the pears are his favorite. :)  He has grown into a very sturdy boy that is either insanely happy, or insanely fussy.  He certainly is extreme!
We are finally getting the hang of this parenting thing and even maybe having some fun with it?? We are anxious to get past McKinley's next big surgery which will most likely be on June 1st.  We are praying that she stays healthy until then because if she doesn't the surgery may be postponed.  She has one of the best surgeons and urologists at Children's working on her and since it's an all day surgery, it's very hard to find a day that they both have totally open.  So having the surgery postponed could be a real pain.
So for now, we are home as a family, enjoying each other and watching the kids change by the hour it seems. I have finally had enough down time lately to be able to admire these little miracles that we waited so long for. We are truly so blessed!!

The problem has been found....hopefully!

McKinley, Brooks and Me not long before our stay at Children's

So...we're still here. 17 days in the hospital and counting. 14 of those days came and went with McKinley only getting worse, not better, and us not getting any answers as to why.  Then came day 15, Friday night around 8pm we were told that McKinley would be going into emergency surgery.  During a routine procedure to place an ND tube they hit resistance, and couldn't figure out why.  After doing an ultrasound it appeared that she had duodenal intussusception, a very rare problem that had actually never been seen by the Dr's at this Children's Hospital. Thankfully, once they went in with a scope they realized that in fact that is not what it was, her problem was that her pyloric valve was incredibly inflamed.  So inflamed that it was completely blocking her stomach. The reason it was inflamed was because the balloon at the end of her G-tube was inflated inside of the pyloric valve, when it really is only supposed to be inflated inside of her stomach.  We're unsure of how long it has been that way but our suspicion is that it has been that way since January 5th, when she had the G-tube placed.
So, during the procedure they decided to place a G-J tube which is a feeding tube that bypasses the stomach. Today they started feeding her through that tube and so far she is tolerating her feeds.  They are increasing the feeds every 6 hours and so far so good.  They are still draining her stomach so she is not throwing up as much. At this point we are just waiting for the swelling to go down, I don't think there is much that can be done to expedite that process.  Her breathing is the main concern at the moment.  She's having to be suctioned every few hours because she can't breathe well if she's not suctioned.  It's probably a combination of her RSV and being intubated for her procedure on Friday. We're not sure when to expect that will get better either.
So...now we wait.  The question is, will we wait in the hospital or at home? It looks like they are leaning towards sending us home. We would love to be back together again as a family, but not before the time is right. We also want to be sure that her RSV is gone so that Brooks doesn't get it! We are praying for the Dr's good judgement and McKinley's speedy recovery so that we can get back to "normal" life...whatever that may be.... ;)

And...we're still here

Don't ask me how she does it, but she manages to smile even through the puking!

Wow. It's been 11 days since we "stopped by" the ER. And we're still here. McKinley isn't really showing many signs of getting better and the Dr's are still baffled. The CDiff does not seem to be the cause of her sickness as she has continued to throw up constantly regardless of the antibiotics she's been on for the infection. And now the latest news is that she has RSV. She is soooo congested, it sounds like the worst cold I've ever heard! She's having a harder than normal time breathing due to the congestion, but has not needed oxygen so far. The Dr's aren't sure if she contracted the RSV at the hospital or if she had it before she got here. They're currently going with the theory that she had the RSV prior to coming to the hospital and that the virus caused an ileus. An ileus is when the bowel decides to shut down and not function. This would explain why she has very little stool output, no gas output, distention in her belly, leakage around her g-tube and throwing up. Unless they are suctioning her stomach through an NG tube, and draining her g-tube, she throws up large quantities of mucus. It's basically like she's pressurized and she'll explode if we don't get the stuff out another way. So, for the past 11 days we've been suctioning and venting her stomach. The mystery has been that even though we're doing that, she's still been throwing up. With suctioning her stomach you'd think she wouldn't have anything to throw up anymore, but somehow she does!
Having said all that, it has officially been 24 hours since she last threw up! She seems to be in much better spirits today, and I'm praying this means we're on the road to recovery. Tonight they have turned off the stomach suction and clamped her g-tube so I really hope she doesn't start throwing up again!
She's also started to act hungry for the first time which is amazing to me since she hasn't eaten in 11 days, but I'm hoping that's a good sign.
Thank you for all of your prayers.  We feel so loved and would not make it through this without knowing that so many people love our McKinley and are praying for her.  We're praying this hospital stay doesn't extend much past the two week mark!!

And back to Children's we go...

McKinley at Childrens

On Wednesday night McKinley started throwing up, and continued to throw up once a day until Saturday morning when she decided to throw up every 10 minutes for 4 hours.  We took her to the ER and after 9 hours of trying to get her to keep fluids down, and giving anti-nausea meds, they decided to admit her.  So here we are 3 days later, and we're still not really sure why she's so sick.  She hasn't eaten anything since Saturday morning, yet she continues to throw up.  They've done x-rays every day and don't see any abdominal blockage and she doesn't have a fever so it's not really presenting itself like a virus.  But she sure is one sick puppy!  Tonight they are going to start TPN, which is an IV form of nutrition since she hasn't been getting any food.  They really wanted to avoid starting it because it can be damaging on the liver, and McKinley has already had it quite a few times in the past.  But...she needs to eat!
One thing they did find is that she has a bacterial infection called CDiff.  That is probably a lot of what is making her feel yucky, but they're not sure it's entirely the cause.  They started her antibiotics last night and so far there hasn't been any change, I'm hoping they kick in soon.
We could really use prayers for McKinley right now!  Pray that the antibiotics start working soon, and that she feels better soon.  Please also pray that Brooks does not get this infection.  One sick baby is enough for me to deal with!!  Please also pray that McKinley will get some rest.  It is so hard to sleep in the hospital with nurses and Dr's coming in and out every 20 minutes.  She is way overtired and I think would feel a lot better if she could get some sleep.
Thank you for keeping us in your prayers.  I will try to keep you updated when I can!

Miracle McKinley

McKinley getting her night time medicines....

One of our good friends came up with the name Miracle McKinley and it is so fitting for her.  She continues to surprise us and the Dr's with encouraging news. 
We got the MRI results back and both the Urologist and the Surgeon were encouraged by what they saw.  It appears that McKinley has the muscles needed to make a functional rectum!  Although she doesn't have the actual rectum, that is something they can build, but they can't build the muscles, so it is so great that they are there!  We're not sure if the muscles are functional or not, but we'll cross that bridge when we get there.  In the mean time, our surgeon feels that it would be best to do the reconstructive surgery sooner rather than later.  The reasoning for this is that 1. she is in good health currently, her kidney is functioning well so let's take advantage of that  2. she isn't eating solids yet so her stool is softer and will be easier on the rectum as she begins to use it.  (Did you ever think you'd be following a blog that talks so much about rectums and poop??  I sure never thought I'd be blogging on these topics. :))  We have a meeting with the surgeon (Dr. Healy) and the Urologist (Dr. Grady) on Feb 24th and we're going to discuss a timeline for surgery then.  Most likely it will be within the next month.
The surgery will be 7-8 hours long and will require a 7 day minimum hospital stay.  This is by far the longest surgery and hospital stay that McKinley has had yet. (Aside from her NICU stay of course).  I am worried about her being under anaesthesia for that long but I know that the anaesthesiologists at Children's are amazing and that she is in great hands.  I'm also worried about a hospital stay that long and how I can be with her and Brooks at the same time.  But once again, thank goodness for friends and family who are willing to help!  The surgery will likely be done in 4 stages with the reconstructive surgery being the first.  The second surgery will be a few months after the first, and this is when they will take down her colostomy, and she can try using her rectum.  The 3rd surgery may or may not be needed, but this one would be for her incontinence, and they'd want to do that surgery before she goes into elementary school.  There is something with her bladder that needs to be worked on and Dr Grady is concerned that it may damage the nerves and cause her to not be able to feel when her bladder is full, and therefore won't know when she has to go to the bathroom.  This would be a problem with any person, but is even a bigger problem for McKinley who pees 4 times the amount of a normal person because of the fluid intake she needs to keep her kidney functioning.  The 4th surgery would be after she hits puberty to make sure all of her reproductive organs are hooked up and functioning properly.  The Dr's keep reiterating to us how difficult it is going to be to potty train McKinley so we're expecting that to be a challenging time. (As if it's not challenging enough with a perfectly healthy child!)
So, we continue on this crazy journey with McKinley.  She has a long road ahead of her and at least 2 more surgeries before she turns 1, but given every thing that is "wrong" with McKinley, she is doing so amazing!  She is a happy, beautiful child that captures everyones heart the first time they meet her.  Thank you for your prayers and please continue to pray that God will guide the hands of the surgeons and anaesthesiologists.  Our prayer is that the surgeries are a success and that McKinley will heal well, and quickly. Love to you all!

Waiting for results...

Brooks - he sure loves to eat :)

Last week McKinley went in for an MRI to check out her lower abdomen and search for different parts and pieces that need to be hooked up.  I always say that she's my little puzzle that just needs to be put back together. :)  Since she is so little she had to have anasthesia for the MRI, but she's getting to be quite a champ with that and went under and came out of it just great!  We are hoping that the MRI will reveal that she does in fact have a rectum that can be hooked up so that she won't end up with an ostomy for the rest of her life.
I've had to pray really long and hard for McKinley over the last year, and for myself to be able to deal with everything that is McKinley. It has been amazing to see how God has changed my perspective and given me the ability to deal with everything that comes our way.  This is our normal, and we are embracing it.
The other day Tony was You Tubing ostomy care and came across a video from an amazing girl. She has made it her mission to change the way people view ostomy's.  She has a blog called uncover ostomy, and it actually really helped me to relax a little bit about what the results of McKinley's MRI will be.  If you get a chance, check her blog out.  She's very inspiring to me.
Don't get me wrong, I'm still praying that they will find McKinley's rectum and that the surgeon's will be able to hook it up and that it will be perfectly functional for the rest of McKinley's life.  But if that is not God's plan, we are embracing beautiful McKinley and all of her uniqueness.
As for how she is doing, she is much better now!  She is over her UTI that she got after her G tube surgery, and smiling again, thank goodness!  She is 13lbs 8oz and has taken a new interest in growling and screeching, kind of like a dinosaur.  It cracks us up!!
And then there's darling, precious Brooks. He loves to talk, coo, babble, constantly.  He just recently started laughing and I can never get a good video recording of it because it makes me laugh, and then that's all you can hear on the video!  He is an amazing sleeper at night (not such a great napper) but absolutely refuses to go to bed before midnight, no matter what we do.  It's crazy.  I think he's like one of those E-trade babies and has an I Phone in his crib or something, because somehow he knows the time.  I actually waited to put him down last night until the clock struck midnight, because I knew that at 11:59 he would still get up. :)  However, this morning, he is still sleeping!!!  It's 10am!  Unfortunately his sister goes to bed around 10pm and gets up at 6:30 so that means I'm not getting as much sleep, but I'm hardly going to complain about 6 hours.  That's way better than the 2 hours I was getting a few months ago!
So....we are currently waiting for McKinley's MRI results.  Please pray that we get great news!  I will update you as soon as I know anything....Or actually, as soon as the kids give me a chance to sit down at the computer :)

Success!

McKinley, seconds before I had to hand her to the anaesthesiologist....

McKinley's G tube surgery was a success!  It took quite a bit longer than expected (2 1/2 hours instead of 45 minutes) which made Mom and Dad a bit nervous, but all in all it went great, and McKinley is now home and healing well.  The reason the surgery took a bit longer is because they were looking to see if she had malrotation of the stomach, which they would have needed to fix while they were in there.  Thankfully she did not have that, so they didn't need to do any other procedures.  So, the G tube is in, and even better news is that the NG tube is out!  We got to use the G tube for the first time yesterday and all went well, so she no longer needs to have a tube blocking the beautiful view of her face.  We absolutely love that the G tube is hidden under her clothes, and there is nothing the outside world can see now that makes her look like anything other than a normal 4 month old baby girl.  Since she has been home she has had a terrible rattling/congested noise in her throat that can best be explained as sounding somewhat like a diesel truck!  Because of this she coughs and chokes a lot, especially at night, which has made sleeping for all of us very difficult!  We have asked many Dr's opinions as to what this might be from, and finally have come to the conclusion that it seems to be inflammation in the trachea from the breathing tube being in there during surgery.  This causes the mucus to not be able to pass through so it gets stuck in there and she can't get it out.  So, the Dr prescribed her 4 doses of steroids and we are hopeful that when she is done with those she will be cured. :)  While Dr Healy (McKinley's AMAZING surgeon) was doing her surgery, he noticed that her liver looked a bit yellow.  His conclusion was that this could be from her getting too many calories and the liver storing too much fat because of it.  The nephrology team was consulted and they've decided to cut back on her calories, but up the amount of fluid she needs by adding more water to her diet.  They figured that a 3lb weight gain in one month was probably good enough progress, and that it would be ok to cut back a bit. :)  We are still struggling a bit to get the amount of fluid that McKinley needs into her without her throwing it back up, but other than that, everything is going well.  McKinley is now 12lbs 2oz, 23 1/3 in long and as of yesterday her creatnin was .5 - the lowest it's ever been!  Dr Flynn (McKinley's AMAZING nephrologist) said that if this continues, we may not need to do her kidney transplant for a few years.  God is working awesome miracles in McKinley's life, I can't wait to see what he's going to do next!!
And never to be forgotten is sweet baby Brooks.  He is (one of the two) lights of our life.  He has turned into a happy, sleepy baby; one that is much less fussy and smiles all the time.  He is 11lbs 12oz and 24 1/2 in long.  He is so fun to be around and although I haven't heard it since, I definitely got him to laugh a few days ago.  Turns out his as ticklish as his mom. :)
As the days go by we are getting more and more settled into our "routine", if you can call it that.  We are so incredibly blessed.  Dare I say life is getting a tiny bit easier for the Miller clan?